Tuesday, October 1, 2013

Touching base with the boss: meeting with patient advocates

Adrienne Bell Cors and Nancy Rene have children and grandchildren with sickle cell disease
Adrienne Bell Cors’ daughter is 34 years old. She has battled sickle cell disease all her life and it’s taken a heavy toll. It’s been tough on the family too. Too many hours spent in hospital emergency rooms, too many days spent in hospital wards, too many years spent watching someone they love fight against crippling pain.

But Adrienne has a hope: that her daughter will be the last generation to suffer like this from sickle cell disease.

Adrienne told her story at our recent Patient Advocate meeting in Los Angeles. The meeting, at the Eli & Edythe Broad CIRM Center for Regenerative Medicine and Stem Cell Research at USC, was a chance for us to sit down and chat, face to face, with the individuals and organizations who have been the stem cell agency’s biggest champions since the idea of funding stem cell research in California was first put forward. At yesterday's meeting we heard from patients and families advocating for therapies for sickle cell disease, multiple sclerosis, Alzheimer's disease, Huntington's disease, autism and cystic fibrosis.

The meetings are important to us because they help remind us why we are in this business, what our goal is. It’s to help people like Adrienne realize her dream. To help people like Adrienne’s daughter fight back against a nasty, debilitating and ultimately deadly disorder.

Patient Advocate meetings are a chance for us to talk about the research we are funding and the progress being made. But they are also, and perhaps more importantly, a chance for us to listen to the people who helped create us, to hear their stories and get their thoughts and ideas on how we can do a better job of communicating with them, of understanding their needs and responding to them as much as possible.

When we talk about our work we often use a lot of statistics and data to show what we are doing; $1.8 billion in research funded, more than 600 grants, 77 different projects, 31 deadly diseases. They tell a story; but they don’t tell the whole story. You can only get that by hearing from people like Adrienne about what she hopes for her daughter, and for all the other daughters and sons suffering from sickle cell and other diseases.

As it happens we have some hopeful news for Adrienne. One of our grantees, Dr. Donald Kohn at UCLA is working on a stem cell therapy for sickle cell disease. You can read about his work, and that of other grantees, on our sickle cell disease fact sheet.

For those whose hopes lie in therapies for other diseases, see our complete list of disease fact sheets on our website.

Kevin McCormack

1 comment:

  1. After Monday’s meeting, I have much gratitude in my heart for the work being doing by CIRM and the knowledge in my brain that my daughter and I are the last generations to suffer from the pain and grief caused by a lifetime of living with Sickle Cell and many other diseases.

    Thank you to the CIRM organization for including Patient Advocates as an important part of your community.

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